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03-12-2014, 08:14 PM   #61
lente
 
Join Date: Mar 2014
Location: Sittard, Netherlands

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I would strongly advice those who haven't tried it yet to ask the rheumatologist for DepoMedrol (Also called SuloMedrol or methylprednisolone). It's a sort of prednisone, but works long-lasting and not as aggressive as regular prednisone, which makes the side effects almost non existing for most patients.
For me it works wonders, also for my niece and 4 other Crohn's patients whom I personally know. All of them experience no side effects whatsoever, and the time between the injections varies for all of us between every 2,5 months to every 6 months.
I really hope someone is helped with this stuff as wonderful as we are, because I sadly know very well in how much agony you all are!
Best of luck to all of you!
04-03-2014, 07:34 PM   #62
Dianna lynn
 
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Join Date: Feb 2014
Location: Moneta, Virginia
I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments have
What drink is that your talking about i have been having large amounts of joint pain in my knees wrists and back and my primary care doctor put me on loratbs but it doesnt seem to help so anything will help me about the pains i will be back on prednisone ina few days and I am regretting it
04-23-2014, 05:19 PM   #63
Jajabinks
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Join Date: Jan 2014
Location: Westchester, New York

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Essie, how are you feeling? I am doing really badly with my back as well and took a Percocet which may me dizzy but helped a bit.
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Fish oil, turmeric powder, n-acetyl glucosamine, l-glutamine, slippery elm, marshmallow root, DGL, multivitamin, vitamin D. Crohns in terminal ileum. One semester left. Academics on hold thanks to painful Crohn's arthritis...
04-23-2014, 06:36 PM   #64
Essieluv
Senior Member
 
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I'm not doing well at all... But apparently my arthritis isn't flaring too badly, my pain is coming from fibromyalgia. Yikes!
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Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
04-23-2014, 07:17 PM   #65
Sparkle2012
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Join Date: May 2012
Location: Jacksonville, Florida

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Essie, how are you feeling? I am doing really badly with my back as well and took a Percocet which may me dizzy but helped a bit.
jajabinks: how are you doing with the turmeric? Do you think it has helped you? I notice a difference in my achy hands when I forget to take it.
__________________
Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
Chronic C&D, blockages
Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
GI#3: End Entacort. RX Pentasa! Flu symptoms. joint pain follow-neg RA
4/2013 Prometheus Positive/Crohns
Markers flat post surgery
Chronic Arthritis
No Crohns symptoms
On Pentasa
04-23-2014, 08:30 PM   #66
Jajabinks
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Join Date: Jan 2014
Location: Westchester, New York

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Essie the nerve pain comes with the arthritis. It's possible there is some active inflammation in your bones somewhere. I get nerve pain in my legs that mimics Fibro but it's really enthesis. The arthritis affects my muscle and ligaments in the joints. I've heard things like Cymbalta and Flexeril work so I am hoping my primary can give me something tomorrow.

Sparkle, turmeric and slippery elm are my favorite. I feel a difference with the slippery elm. As a matter of fact, it's listed in the Crohns for Dummies book as a great herb in the alternative medicine section. It helps both my IBD and joints. I need to order more ASAP! I like the turmeric in powdered form in my warm almond milk. Everything in it's original state instead of capsuled seems to work better for me.
01-15-2017, 06:11 PM   #67
jazzygirl52
 
Join Date: Sep 2011
Location: Springfield, Massachusetts

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I've got pain in my wrists, shoulders, hips, knees, ankles and feet Beth. I've seen Rheums and I'm negative for RA factor but x-rays showed some degenerative stuff going on as well as a genetic thing with some of my fingers .. Might be related to Crohns or the immune problem but not sure yet.
I have Crohns after years of Colitis/Crohns and then colon cancer. I did Humira for two years but started having reactions...one was disabilitating knee pain, another was psorasis of the scalp and eyebrows and rash/itching. Now I am on Remicade.. just a few months and working my way up to the 2 month treatment periods. I am having the worst achy joints - all of them-- that tylenol cannot even touch. I have used Voltaren Gel (aspirin like rx creme) on the joints and have tried medical mj creams and heat packs and more. Living in the northeast with cold winter weather doesnt help but this is new since the Humira/Remicade. I have not been to a pain mgmt doctor, but did just go to an alternative medicine dr who has some supplement that may help and diet (taking out dairy completely..... cant eat fruits and veggies, cant do dairy, sensitive to gluten. UGH) ....good to know others have the arthritic pains from crohns.. well not good but good to know it isn't just random . I do not have RA. My brother has RA and IBD though. UGH
02-07-2017, 01:28 AM   #68
Amn
 
Join Date: Feb 2017
Location: San Jose, California
Hi everyone,
I'm new to the forum, but already somewhat familiar to this page.. I just finally decided to join to share my (brand new) experiences about Crohn's related arthritis... my CD started 9 years ago, never had hardly any joint or muscle issues. But an ileum surgery (late 2014)put me to remission, and in the last few years I got some tastes of lower back pain, knee pain and swelling...they were rather short lasting though. Until a week and a half ago.. when my right knee totally swelled up, then the left joined, then my right ankle got all inflamed and hurt like hell, and any weaker joint in my body followed these too left thumb, jaw..
I don't take any meds, nothing worked out for me just the side effects. I do take supplements, my real medicines.
Oh, speaking of which, I had been taking Reishi mushroom for about a year and a half, and I finally tapered it off -- guess WHEN... A few days before all the joint issues started.

Systemic inflammation is the key to all our sufferings... so now I know, that Reishi was really doing great for my system. So last week I went back to it and also started taking high dose of Tumeric extract capsules (with added black pepper extract, it's crucial for its absorption), and then finally, thanks to just divine luck, I found the best anti-inflammatory supplement I've ever heard of: it's a blend of enzymes that works systematically, called Wobenzym N.

I seriously have all my hope in these supplements listed above, that's the only reason I'm sharing it. I had some improvement with my legs (knees+ankles), but due to all the struggling to walk it also worsened...overall it seems to be getting slowly better. Turmeric takes longer to effect, Wobenzym, not sure, but today was the first day I took it (3x3). I will come back and write about how it goes forward.

Sorry in advance though, but I don't want to spend lots of time on IBD forum again (like I did in the beginning), it is supportive but it also contributes to getting stuck in this "disease identity" and often when many people are so desperate and stuck due to this 'crazy disorder' , it is unconsciously keeping the majority in similar patterns...

Wishing everyone new ways to open up for this healing journey!!!
10-03-2017, 03:09 PM   #69
swamper
 
Join Date: Sep 2016
Location: Russellville, Arkansas
I am diagnosed with enteropathic arthritis. In fact I've had more trouble with back pain over the years than I have had with Crohn's. My back pain started with extreme stiffness in the morning. The pain itself is an aching pain mostly in my mid-back that sometimes progresses to a burning pain. Sometimes when its really bad my sternum and ribs get inflamed and its hard to breath without pain.
__________________
Male, Age 52
Diagnoses: colitis symptoms since age 19; ankylosing spondylitis age 28; ulcerative colitis age 36; chronic pain age 42; enteropathic arthritis age 49; Crohn's disease age 50; high blood pressure age 51
Medications: Methotrexate, remicade, gabapentin, oxycodone, losartan, folic acid, prednisone
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